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Thursday, February 7, 2013

This is cross-posted from my Nourish blog, to keep you up to date. My health took a turn for the worse last Fall. This post was published 11/8/12:

Last week, while we were all already dealing
with a terrifying hurricane and no power for days, I began experiencing
dramatic shortness of breath after
only taking a few steps.I struggled and
struggled, trying to convince myself it was just something I was imagining, even though I was
taking deep, prolonged gasps for air with the least bit of exertion. I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end
up with Olympic level lungs.Finally on Sunday, Mary Kate announced she
couldn’t watch anymore and she called 911.

I actually conceded to ride in an ambulance, because I knew
I wouldn’t have made even the few yards to the car.And I agreed to go because all through
that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis
offhandedly mentioned his past bout of pleurisy was bothering him.What do you say to someone who you have been
married to for 17 years and who is notorious for not taking care of
himself?“What are you telling me
for?Call the doctor.”And he replied, “I will, right after the
holidays.”Well, he never made it to the
holidays.He died of a massive heart
attack on December 20.He had no idea he
was mortally ill.He never would have
left his kids behind if he had had any choice in the matter.These are the things that went through the
head of this particular notorious patient, over and over again, as I struggled
to breathe.

So off I went, sirens and all.I was too scared to be mortified.Well, I was too scared to be really
mortified.I truly was more relieved
than anything.

I suppose because I grew up with a world class hypochondriac
who I never believed a word from, I always assume that I will not be taken
seriously.And, as a matter of fact, I
often am not.Part of it is, yes, due to
managed care and the time constraints that limit practitioner revenue.But I think it is far more because healthcare
providers are jaded, bored and do not listen. (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first
in a series of MD’s who would ask me the same questions, few of which would be
apropos and who would not listen to the answers anyway.Then curtain discreetly opened enough for a
young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with
a raised eyebrow.He was the most
adorable thing I had seen in a long time and I nearly told him that.Way to start an assessment by being defined as a dirty old
lady.

He was cute, as I said, but mostly he just exuded
niceness.He was polite and sensitive
but not smarmy.He listened to my
responses and then repeated them back to me in
different words!!Agghhh!! He got
it!When he came back with my lab
results, which indicated I was in dire need of a blood transfusion, he looked
so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the
hospital had just opened to facilitate patient back-up.Because oversight of this department was my
job at another hospital, I knew what they were trying to do, but they were
failing miserably.Beds in our local
hospitals are like gold.When you have a
high population of elderly and poor, as you do at the Jersey Shore, ER’s get
backed up very, very quickly.A hospital
only has so many beds.Most of them are
dedicated, such as orthopedic, surgical, or mother/baby.You can only place that kind of patient in
that bed.If your patient has a
co-morbidity, such as a communicable disease or infection, they have to be
isolated or put in a room with a patient who has the exact same diagnosis AND
is the same gender.So your bed
possibility is reduced even further.It
is a constant juggling game.Sometimes,
the Gods smile and you can fit everyone together like a Chinese puzzle.Other times, it is a nightmare of vast
proportions with 20 seriously ill 80-plus year-olds languishing in the halls of
the ER.Within hours you have family
members in your office, who you completely sympathize with, screaming at you to
get their grandmother out of the ER corridor where she has been for 20 or more hours.But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called
it at my facility, it has other names, such as the Discharge Unit, which
confuses the hell out of everyone because the patient is only being discharged
from the ER to the hospital).Anyway,
the thought process is to get the patient completely assessed and prepped and
tied up with a little bow so they simply have to be moved into the proper bed
when it becomes available. The patient gets to wait in a comfortable bed in a
nice little curtained cubicle.Sounds
like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .The patient continues to suffer in
limbo.Patients are not discharged from the main
hospital any faster, and that is where the backlog starts.So patients aren’t stuck in the hallways
anymore, but they do get stuck in these way stations.They are uncomfortable and there is no
privacy.When you are already sick, you
feel simply miserable.Patience frays,
family members lose their tempers.Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.Every conversation with every specialist who
came to talk to me was overheard by the entire place.The space assigned to each patient, divided
by curtains, is approximately 8’ by 10’.And I am being generous.The guy
in the cubicle next to me snored all night long, interspersed with shouting out
obscenities. Charming.The
little
old lady in the cubicle on the other side of me was enduring the pain
and confusion of dementia and she whimpered the whole time.And periodically snorted violently.I spent the night in contemplation and
prayer.I contemplated holding pillows
over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual
physical blows as long simmering issues exploded over their sick, elderly
relatives.Mom always did like you best.

So by the time I was sprung, everyone else had already been
moved along with the indelible memory of when my last menstrual period was, if
I was having difficulty urinating and if I was sexually active, among other
delightful tidbits.For, additionally, the subtext in everysinglesolitary consult was Fat.Did you know you were Fat?How
long have you been Fat?Did you know
being Fat can make you sick?What are
you doing to stop being Fat?Fat, fat,
fatty fat fatty.Fat.I am ready to stick my head in the oven, but
I know if I ask where the kitchen is they will think it is because I am Fat.I turn on the television power for the
Internet and notice for the first time the screen is personalized.Name: Marie Cooper, Room Number: 6007,
Overweight.WHAAAT?!?!It’s even on the effing TV?!?!Then I see this is the weather: OverCAST.Oh.

For a horrible minute, I thought even the Internet was on my Fat Case.

On the plus side, my room is spacious and bright.I am getting great care from kind people (for
the most part).Mary Kate brings me
flowers, and better still, brings me Madailein, who charms everyone by saying “Hi
Da Da!” when my male tech walks in the door.He did turn a trifle pale.My
dear friend Kathy from high school comes by.Deacon Gail brings me Communion.Christine comes by but I am at a test.She comes the next day in a blizzard!!I am surrounded by love, including virtually on Facebook with dozens of
kind and encouraging thoughts.

I go for test after test, but I am still so short of breath
it is almost incapacitating.While
talking to the pulmonologist, I realized that the litany of symptoms is a mirror
of the transverse myelitis I had eight years ago. I suggest that to her and she happily
agrees it is a possibility.I started
the IV steroids yesterday, too soon for any improvement, but fingers
crossed.On the other hand, I am feeling
overwhelmed that the MS is causing such significant and crippling
symptoms.The prognosis will not be a
good one.People who have lung
involvement end up on respirators.I am
so scared.

One of the people I encounter here is a jolly woman who
brings me my dinner tray.I am very down
about the whole Fat thing and I say so.She puts her hands on her hips indignantly.“Honey, you are a lovely looking woman!Beauty comes from the inside.No one has a right to make you feel bad about
yourself and you need to tell them that.You need to say ‘That makes me feel bad. Don’t talk to me like that!”I don’t care who it is!”She shares some of the incredibly overwhelming
circumstances she has struggled with and I am so touched by the generosity of
her spirit.I feel better simply from
being exposed to her spontaneous kindheartedness.It is such a gift to have someone like this
placed in your path when you most need it.

And then there was the blizzard!!A week after the Jersey Shore was devastated by
Hurricane Sandy, we are hit with a pre-season blizzard.People who have just gotten their power back
after six days lose it again.No one is
prepared for eight inches of snow.

The
view from my hospital room on Wednesday. I know it says Thursday, but I
am not operating on all four burners right now. So that is a big FAT
mistake, ok?!?

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The Renegade

I have been diagnosed with MS since 2005. MS does not make me a better person, or stronger, or braver, or cause me to stop and smell the roses. It mostly makes me miserable, cranky and very, very sick. MS is a relentless thief that has stolen my life and my future. I am not a happy camper.

I will never say “I have MS but MS doesn’t have me”. If you say things like that, you probably won’t like my blog very much. I have a Bad Attitude about MS. It is a Bad Disease. I have to live with it, but I will never, ever accept it.

In this blog I will talk about the impact MS (or chronic illness) has on all of us who are afflicted and what might be on the horizon to help us. Hopefully you will find some value here, or at least some commiseration and empathy.

Regarding Paypal

This post, A Humbling Decision, describes the pain I went through in deciding to place a Paypal button on the blog.

If you would like to help financially, your contribution would be used with care and thanks.